Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

albertcampion did they give you any anti nausea drugs (like metaclopramide?). If so, I would suggest taking it. I had to phone the emergency line after my first chemo as the nausea was unbelievably horrible! I'd been given some metaclopramide to start the next day, so didn't know if I could take it early, so phoned them. They said take a double dose, which I did, and it went completely. They changed the anti-nausea drug i had before chemo for the next 2 EC, and it was never as bad as the first time as it worked so well. Definitely phone the emergency line, as that's what they're there for, and they would hate to think you're suffering when they can help. Hope you feel better soon - feeling really nauseous is horrible.

@Acinonyx2 I'm not sure. I'm always very prone to chest infections, and every few years I have one that just won't shift for ages. My theory is that it's one of those, and my immune system hasn't got enough left in it to sort it out. The duty doctor on the chemo unit keeps checking my chest and nothing sounds untoward. The upper airways just seem seriously annoyed and can't calm down...
I just hope the inhaler does the trick!

Thanks so much for all the info. I will try to hold off til tomorrow as I did have IV steroids and it is a bit better at the moment - I think I got in a state which made it worse. I need to get better at controlling my stress and reactions to things! The cyclizine they gave me is anti-nausea - they said it was just a different one to normal because of my UC. I've taken one and it hasn't done much but I can take another in a few hours, which I guess might help, too.

KentishMama I am so sorry to hear about your cough - that sounds really horrible and exhausting.

Hi all,

Just marking my place and wanting to introduce myself - I've been reading through many of the posts on this thread in awe and trepidation, and I hope everyone is managing to get the support they need right now.

I got my diagnosis yesterday - no details yet, but described as a "small" breast cancer, "extremely treatable" according to doc, but treatment will definitely involve surgery and anything else depends on MRI results. I'm 38, married with two kids (8 and 2), and just stopped breastfeeding my son this summer, so for a few months I assumed a lump on one boob was a cyst or blocked duct. Had scans to check it out last week, biopsy was suggested on the spot, and here I am a week later. Have spent the last 48 hours veering between "this is the best possible result of a huge spectrum of terrible results, it could all be dealt with and over by summer 2021" and "OMFG is this going to be the rest of my life, nothing will ever be the same, my children's childhoods will be destroyed and it's somehow all my fault".

Husband, parents and best friend (out of town) know. Definitely too early to tell school-gate friends, and no way will the kids know until they absolutely have to, and then only in simplified terms (8 yo daughter is anxious as it is and this would crush her). It was a huge relief to speak to my mum today, though, having worried that the new would upset her and that I'd be burdening her - I actually feel so much better as a result, less as though it's a dirty secret and rather a shared challenge that we'll get through together.

Anyway, if anyone is dealing with BC specifically, and managing with young kids, would love to hear about your experiences and any tips you can offer. I've spent too much time on Google already and have decided I need to carve out a safe space online and avoid the rest - so, here I am!

backformore welcome to the group. I was diagnosed with breast cancer last october - her+, small lump in right breast. I have a 7 year old ( was 6 when I was diagnosed), who has amazed me at how resilient and unphased he has been. He's an anxious child aswell, and has taken it all in his stride and coped remarkably well (better than me and my DH!). We explained in age appropriate language that I was ill, and that the medicine I would be taking would make me poorly and that I'd lose my hair - but that I would be better in a year. He was quite excited about me getting a wig - he suggested getting a green one so I could dress up as a clown!

The hardest parts for me were when I had hospital admissions, as I'd never not been there in the morning when he got up - but he was ok and coped really well. I also was upset about losing my hair - but had to accept the inevitable as a part of the treatment to get better - and it's growing back now, and I've come to terms with it.

The main thing I learned was to just take it one day at a time. Once you get your treatment plan, you pretty much step onto a treadmill and keep going on the hospitals timetable. I found this lack of control of my life quite difficult to cope with, but got used to it and then found it easier to deal with - just thinking about the immediate next step, rather than the whole year long treatment plan, which was just too overwhelming.

Please feel free to ask any questions here, or just rant and scream! It's hard - although I personally found it easier to cope with mentally once I had a diagnosis and a plan - the not knowing and waiting was torturous. I found my gp a great help and started taking anti-anxiety medication as I waited for my diagnosis and treatment to start - they really helped.

I hope everyone has as good a weekend as possible.

Hi @backformore I think they were worried at my lack of reaction when they told me - but I'd already freaked when I got a quick call back and was told I "could take someone with me if I wanted".

I'm now waiting for whatever is next after the MRI

Hello to all the new people, sorry you find yourself here and I hope everyone is a well as can be.
Well I had what I had hoped you be the last of my tests last week and was hoping to hear from someone, wasn't expecting a letter and had to google what I didn't understand. I think it's goodish news. Neck needs no further investigation. The tumors on my adrenal glands are rare and only 1 in 10 are cancerous. Gyny have me marked as urgent.

I'll feel better when I actually speak to someone, tried to get in touch with Doctor as I'm really not coping well at all but was informed they are very busy and I'll get a call week commencing 19/12 but might stop being pleasant on Monday and kick up a fuss.

Thanks so much, Zorgo and Molly!

Hospital admission scares me, too (not least in Covid times). Keeping everything crossed for a simple lumpectomy and a bit of radiation.

Hope everyone has a good weekend. In a way I’m finding it hard to be normal in front of the kids, but they’re also a good distraction. Temptation when they’re at school/nursery (I work from home) is just to curl up and cry..!

Hello @backformore. So sorry you have to be here, but nice to meet you!

I was diagnosed with what was thought to be a DCIS in my left breast back in September. It turned out to also have invasive cancer which had spread to a lymph node. I had two ops and have just started chemo. I echo what others say about the waiting - that has definitely been the worst bit of it all so far.

I have a seven (nearly eight) year-old DS, and initially we kept everything from him. When it became apparent that my treatment would last a while, we decided to talk to him and the breast nurse advised this was the best course of action. We found this video on YouTube which we found really helpful to help us frame our conversation with him:

One thing the video mentions which hadn't occurred to me is the fact that children can blame themselves - they think it is somehow their fault that you are ill. Or they sense that there is more you're not telling them and imagine far worse things than the reality. For that reason, we decided to be much more open with DS than we had originally intended to be.

For us, we found it went reasonably well, as he was old enough to understand the concept of what we were talking about, but not old enough to be aware of the implications of the word "cancer".

I'm keeping a blog about my experiences (apologies to others as this is the second time I have mentioned it). I wrote a post called The Talk which describes how we handled it and how he (and I) reacted to it all: darkmutterblog.wordpress.com.

So sorry you are going through this. It sucks.

Hello @backformore and welcome. Sorry you have to be here though.
I was diagnosed with Her2 positive Breast cancer back in June and have just completed 5 months of neoadjuvant chemotherapy to shrink the tumour before surgery. It was tough and @AlbertCampion you have all my sympathy it's hard to deal with the nausea and pain. Take all the drugs they give you, don't hold back!
I now have a date for surgery on Dec 21st. My plan to close the house to visitors at Christmas turns out to have been the right thing to do. DH can pedal off and see his family but the adult kids (three each) will have to do their own thing this year.
I am feeling better as the days go by as the chemo is wearing off. My hair is sprouting fluffy and grey, and my broken ankle is healing. I can even walk across the kitchen now. I resumed washing up duties after six weeks off. DH has been an all round hero feeding me and putting up with me moaning.
It seems like the start of the next phase now. It's like some giant health triathlon testing me in every way.

@Starmer I get defensive with the GP bashing in the media. There is a national shortage of GPs now and I have made it worse by quitting. Those that are left are struggling to manage demand in a Covid safe way and getting flack even though they are run ragged 12+ hours a day. My poor partners are exhausted. I don't think the public realises how close to broken the system is. The way to use the system is to state very clearly when an issue is urgent as otherwise all routine stuff gets deferred till someone has time for it.

@Bloodybridget how's your DP getting on? can she weight bear yet? I am so grateful I have a Biden boot and not a full plaster of Paris as I can take it off and wash and exercise the ankle.

Warm wishes to all this chilly weekend

@backformore I'm so sorry you're here with us, but welcome! I was diagnosed with ER+ PR+ HER2- breast cancer in August. I had a very tiny tumour, and lymph nodes looked clear initially. But after surgery it turned out that the cancer had spread to 5 out of 13 removed lymph nodes, so suddenly had to add chemo to my treatment plan. One thing I wish I had done differently early on in this journey is communicating my treatment plan. I'd told everyone it was early stage BC and I'd only need a lumpectomy and radiation. To then have to correct that statement to say, actually, it's locally advanced cancer and I need chemo --- that was really tough. So my advice would be to only communicate one step at a time, as things do change as you go along. I hope that isn't too discouraging to you!
I also wanted to say: my anxious 5-year old has been a complete star in all of this.

Love to you all, hope everyone is having a great weekend!

Thanks so much, Albert - and I will definitely check out that video and your blog!

KentishMama, that's what I'm afraid of, too - that the picture changes as they dig deeper - so that's good advice to only update step by step.

Sending good vibes to you all! xx

Morning all, hello and welcome to @backformore, I am sorry you are having to face this, but hope other people's experiences of explaining to DCs is helpful. Have you got a date for the MRI?
@TopOfTheCliff any chance you'll get out of hospital before Christmas? A friend of mine is going in for breast reconstruction on 24th! Good to hear your ankle is finally healing, and hair growing! Thanks for asking about my DP, she has the cast another two weeks and can't bear weight on it, so it's really hard going and we are both rather low. Triple C crap - Covid, cancer, cast!
@nixnjj good that they are not worried about the neck business, do you feel reassured enough? I would be trying for an earlier phone consultation if I were you, 19th seems a long wait.
Sending love and good wishes to everyone here.

@Bloodybridget It was my GP's receptionist that said 3 weeks. 2 practices joined together due to shortages etc, my actual GP is fab. I'm looking for something to help I'm not sleeping, parenting well or doing very much. Im expecting a call from endocrinologist when all blood test results in.
As far as what's wrong. I saw something and the symptoms described what i've been thinking were panic attacks for the last 7 years, scary and if untreated life threatening but only 1 in 10 are cancerous. I'm scared but positive.

Hello and welcome to new faces. Sorry you find yourself here. You'll find the best people on Mumsnet on this thread

I'm just here catching up on everyone really. After a bad week last week where I really didn't manage my fatigue well, I'm feeling a bit better today. I had massage on Friday and Saturday - yes 2! Mainly because of Covid restricting appointments to 30 mins. My body is very broken from all that lying in a hospital bed this year. So back and shoulders first, followed by legs and feet. I wish I could afford a weekly massage to help keep me moving.

Today I managed some light exercises. I also tried a Pilates for beginners but after 10 mins of warm up I had to give up. I don't think I'm made to bend 😂

Still waiting for my PET scan to be confirmed.

Hugs to all
(special wave at my haem fellow @iVampire)

Hi all. Welcome @backformore. I echo what @InOtterNews said. This group is my safe place and everyone is so supportive.

I'm very envious of your massages @InOtterNews. Hope they helped?

@TopOfTheCliff good you have a date. Hope you're home for Christmas.

We put the Christmas tree up today. Wasn't planning to but 7 year old was epic about it. I've spent most of the weekend trying to get organised for January and my op. I had a mild panic about nighties vs pjs. I know, first world problems.It's weird what freaks me out these days. I need to figure out how we cover childcare costs for the first couple of weeks, as I am the one looking after the toddler during the day. Still pretty calm about the diagnosis. I think the control freak in me has kicked in and I'm trying to control the stuff I can?!?

Hugs to everyone that needs one and I hope everyone is doing as well as they can.

@Bloddybridget - thanks! No date for MRI yet. I'm a bit confused as to why they wouldn't do this before my meeting with the surgeon to discuss genetics, surgery type, etc. (which is happening on Weds) but I suppose I'm just one person in a long queue...

@backformore the appointment with the surgeon could be an opportunity for you to ask about a date, he or she possibly won't know but might give you contact details for their secretary or the scheduling team.

Oh sorry backformore I was getting mixed up and thinking you were waiting for a date for surgery - still I think it's worth mentioning this to the surgeon.

No worries! And yes, I definitely will mention it if I still haven't heard anything. It would seem like a fairly important bit of information!

Any suggestions for something to help with mouth ulcers? I have two which after several days just seem to be getting worse, I've swished salt water around my mouth the last couple of days but it hasn't made any difference. Should I get some Bonjela? I can't open my mouth properly and eating is hard.

@Bloodybridget anbesol is brilliant for mouth problems. Has lignocaine in it.

Oh thanks very much @MrsPnut, I'd never heard of it. My local Boots had it in stock apparently, will see if someone can get it for me.

Try difflam mouthwash.
Great stuff.
Still no news

Love to allx

@InOtterNews - waves back!

As you can now have touch therapies, see if there are any reflexology practitioners near you experienced in those living with cancer. I’m not sure I really ‘believe’ in all its purported benefits, but I found it both relaxing (whilst happening) and invigorating (feet felt so zingy afterwards)